A Tennessee couple is attempting to remain hopeful as their 4-year-old daughter battles terminal brain cancer.
In February of this year, Ciara and Joey Lanham‘s world came crashing around them when they discovered that the health issues their daughter June was experiencing were due to six tumors in her brain and down her spine.
Doctors confirmed the worst only one month later: June had a rare brain cancer called Choroid Plexus Carcinoma and Leptomeningeal Disease, which occurs when cancer cells migrate to the cerebrospinal fluid.
“Our life was forever changed,” Ciara, 24, tells PEOPLE. “The hardest thing is watching her fall apart and there’s nothing, as a parent, that you can do to take her pain away.”
The pair also share 5-year-old daughter Jolene and 1-year-old son Jericho.
In addition, Joey, 25, lost his job after running out of unpaid, job-protected leave under Family and Medical Leave Act (FMLA), and Ciara is not too far behind losing hers as a center representative/sales agent for the same reason.
“It’s sad parents have to choose between spending time with their child, taking them to appointments and staying overnight in the hospital or keeping their job,” Ciara explains. “It really is unfortunate that three months is all the time allocated for FMLA, even when your child is very sick and dying.”
With their piling medical expenses, Ciara created a GoFundMe page — something she was hesitant to do but felt like the right next step given their job situations, June’s medical battle and caring for two other young children.
“Joey made the majority of our income. We lost insurance after he lost his job and have wiped out our savings,” Ciara explains. “I never thought I would be in this situation, but 2020 has hit us hard and has been the worst year of our lives.”
The family began to struggle around September of last year, according to Ciara, when they noticed June, who describes as “full of life, sassy and the funniest 4-year-old I have ever met,” was starting to have trouble walking and keeping her balance.
After visits to a pediatrician and a specialist resulted in June being diagnosed with a gross motor delay — she was then given a leg brace and began physical therapy but neither seemed to help, Ciara says.
“It got to the point where we had to hold her hand to keep her from falling over,” the mother of three recalls. “She also developed a lazy eye, and her eyes started to cross.”
The Lanhams took June back to the pediatrician in January, who then referred an optometrist for glasses. But once again, nothing seemed to get resolved with June’s health, and quickly after, she began complaining of a headache for the first time.
“My husband and I just felt something was wrong, so he took her to the ER at our local children’s hospital,” Ciara recalls. “They ended up doing a CT scan and found two tumors in her brain — one on her brainstem, which was causing all of her issues, and one towards the top of her brain.”
June was then immediately admitted to the pediatric ICU at East Tennessee Children’s Hospital, where she underwent a full-body MRI. It was soon revealed that there were four more tumors in her brain and on her spine.
By March 3, doctors gave the Lanhams the brain cancer diagnosis, one that Ciara says “has proved to be terminal in the past.”
And since then Ciara reveals how her daughter has undergone two tumor removal surgeries and been through four unsuccessful cycles of chemotherapy. She recently started another cycle using different medicine to see if it will work and as of last week, the tumors had stopped growing and spreading.
But throughout June’s health battle, Ciara says her daughter has “been so strong through all of this and tougher than any adult I have ever met.”
“She knows she has cancer and tells us all the time, ‘I have cancer,’ but she doesn’t understand what it actually means,” the mom notes. “Sadly, she is used to all of this now — all the chemo, hospital stays, clinic appointments, it’s her new normal.”
In addition to June’s struggle, her parents also are attempting to get into a rhythm as only one parent is allowed to be with June during treatments and no visitors are allowed to come to the hospital due to COVID-19 restrictions.
All the while, the parents have been documenting June’s progress in a Facebook group called “June’s Fight” as well as balancing their own emotions while remaining strong for their other children. “It has been very hard for us, but it’s something we have to do. If June or her siblings saw us being upset and stressed all the time, then they would feel that too and that’s the last thing we want.”
With a background in the creative and educational fields, Amelia Finefrock is freelance writer, singer-songwriter and nanny based in Chicago.